52 acts of charity and kindness for the year ~ making the world a better place one moment at a time

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Thursday, 8 May 2014

I Want To Talk About .... M.E.

This week, a dear friend, who also happens to suffer from M.E was supposed to be here as a guest blogger, but unfortunately due to health issues has not been able to. So, instead, I am going to talk about M.E. from what I have seen through being around her.

I Want To Talk About .... M.E

M.E. does not mean 'me'. It stands for Myalgic Encephalopathy, formally known as Myalgic Encephalomyelitis. It is similar to the more commonly known CFS aka Chronic Fatigue Syndrome, so much that they are often placed together in medical articles. However, they are not the same thing, and often require different treatment, if treatment is to even be given at all.

The friend who was due to guest blog here was officially diagnosed in 2008, but had been showing symptoms for over ten years prior to this. I have seen her go without doing the things she wants to do, as she does not have the strength to do what so many of us take for granted on a daily basis. On a good day, she can walk with crutches, or can sit at a gig, or sit up all night to chat and play games like any other person. These are largely resting type activities.

There are days where I get frustrated for her, as I'd love to see her get up and dance, or come with me on a walk through the woods (at a slow pace, because I do have Spina Bifida Occulta myself, so I can't hike!) or even do a girly day where we pound the streets of the northern quarter [in Manchester, UK] to buy stuff from all the cool, quirky shops. But I know this will never happen as her energy and strength is not high enough to, and it breaks my heart to see her missing out and that she can't share these simple things with me.

On a bad day, she cannot do anything. Practically confined to bed rest. It is debilitating and extremely painful for her to even move.

I don't want to give many more details than these as it would be against her privacy and unfair to tell her story when she is not well enough to confirm all the details.

So here are the facts I do know:

There is more research into HIV or AIDS or any other publicly recognised condition than M.E.

M.E. is an invisible illness, there are no outward signs of it.

It can cause depression, and there is a higher mortality rate due to suicide or M.E leading to other conditions as it can weaken your immune system, letting other illnesses take hold.

M.E. itself has never killed anybody directly, and due to this, there have been no major peer reviewed studies or medical testing into it.

many sufferers cannot hold down even part time jobs due to how random the attacks can be, leading to the majority having to rely on relatives for care or the benefits system, which is often under attack, as how can you prove a condition when it cannot be seen?

This month sees the annual M.E. awareness day on may 12th. Please join in with Project52 by raising awareness for M.E in which ever shape or form you see fit. I'll be joining in with the blog bomb! #May12BlogBomb